I can’t really tell you how much I wish this were more well-known. I know that I can’t make anyone else really feel the same way, either. Not in the meaningful way I’d like, at least. I don’t think anyone can feel it properly unless they’ve been there.

The medical community might think it’s not worth exploring but try asking the mom that had a miscarriage two months before getting pregnant with her ASD son. The one whose miscarried pregnancy was completely not right in every way from the very start. The pregnancy that was likely miscarried for some sort of immune dysfunction.

The bad pregnancy that probably affected the pregnancy immediately following it two months later.

Whatever happened to my immune system happened to him. He was born with those immune problems and spent the first three years of his like always sick. Vaccines (especially the Hep B) played such a large role in keeping him sick and making him sicker. Each shot make him slip further away.

I find myself having many of the same issues but I’m older, I’m not developing and learning and becoming a person. I already know how to behave appropriately so when these issues arise in me, I already know how to handle them, or at least control them. I already know it’s not normal.

He was an infant with no prior knowledge. He was a brand new being and all these things were imprinting in his brain as being normal.

And now his immune system is shot and his viral titers are crazy. He will not likely ever be able to stop taking antivirals and antifungals. It’s just an unfortunate reality. His recovery is completely reliant upon them. Without them, his ASD symptoms return. It’s been proven over and over in him. Take antivirals and symptoms disappear. Remove antivirals and symptoms return. We’ve replicated this scenario every year.

I’m not sure how much more proof anyone could need. You don’t even have to believe that he has immune dysfunction. All you need to do is believe that antivirals clearly improve his ASD status. He goes from mostly recovered while on it to not at all recovered when off. We can do this over and over and over and over. There’s obviously some kind of correlation that should give any doctor pause.

And yet I can’t get many western medical professionals to “get it” and understand autism is more than a set of psychological symptoms. We’re fortunate that we’ve got a wonderful ped and a wonderful DAN doctor. But it took us a long time to find a doctor that looked at the results instead of towing the party line.

Medicine should be progressive. We should be open to learning, not pressured by organizations and companies with an agenda.

These are the types of studies we need more doctors to read. We need more doctors that will employ critical thinking skills instead of looking up the same tired answers in a medical book or rehashing the same biased information from what has been proven many times over to be biased journals.

Maternal (possibly even paternal) immune dysregulation should matter. Immune dysregulation as a subtype of ASD should matter.

How much longer are we going to pretend the medical community doesn’t have an agenda?

I don’t trust doctors. Some would call me paranoid. Some would say I’m overreacting. I wonder how much longer they’ll be able to hold on to that theory.

Legislators, supposed christians and state leaders, have sent a message. They don’t give a shit what you think. They don’t give a shit about the AMA. They don’t give a shit about ethics. And they sure as hell don’t give a shit if you trust your doctor.

It’s perfectly okay and encouraged to lie to patients.

Do you really believe it stops there?

This touches on many topics. I won’t even touch the religion in politics or the abortion issue as this is an autism blog but understand the entirety of my opinions for all three results in no one ever cares until it happens to them.

Pro-lifers believe abortion should be illegal but would they be okay when it gets to the point of arranged marriages? Not all pro-lifers believe that they shouldn’t be able to use birth control. Not every religious person will be okay with a doctor lying to them or others. Not every religious person will be okay with their bosses asking about their sex life.

How irrational are we now? No one cares until it happens to them. No one cares about our concerns or our children. No one wants to believe that this type of thing could actually happen in this country. The medical community couldn’t really be in the pockets of big pharma or the CDC. Politicians and money can’t really be what’s going on here. We can’t seriously be more concerned with reputations and appearance than the actual health of our children. There couldn’t possibly be an agenda.

Do you care yet?

It’s hard to believe I can still get angry even when I’m not surprised at all.

I’ve always found this kind of thing fascinating. While I’m not at all impressed with the never-ending quest for genes (c’mon, there have now been over 40 genes identified; how many genes do we need to identify before we wonder if it’s really genes?) This is the best we’ll get out of the whole gene theory–which just brings it all back to being triggered by the environment, I might add. Gasp! Whodathunk it?

Regeneration, on the other hand, that’s another ball of wax altogether and brings out my Whovian fangirl. This is what science is about. This is what medicine should be about. Real research that produces real results. These are the things that bring us closer to understanding at least the one thing we do know about autism – many of those with ASD have structurally different brains.

Get scientists studying the right things. Metabolism, immune system and brains. Get out of the genes because it’s a dead-end.

Great answer Cheryl. Do you have a blog entry on this? Would be a nice addition if not.

(redacted)

On daily basis, there are many tests are talked about on this mailing list and since I am a beginner with all biomed, everything sounds to me like alien. I find all this information super overwhelming and takes time to digest everything.

So here goes my questions – – All the tests that anyone talks about, are they all suggested and ordered but you (DAN!) doctor?

Any MD/DO can order any of the labs. Some you can order yourself.

– Do you need special lab to do these tests or regular labs do these tests?

I rarely use a specialty lab. Great Plains and Doctors Data take insurance, though. I think of the specialty labs, the most important one is the CSA and OAT. Not all of the information is reliable but it’s defnitely helpful.

– How often these tests are covered by the insurance? (of course, it depends on the insurance but if you have a ‘good’ insurance, like we have Oxford)

The only test that I’ve found not to be covered is food allergy testing. IgG testing just isn’t mainstream enough. But only if the lab you see takes your insurance. I do believe you can self submit to your insurance if the lab doesn’t take it but it will be at a lower rate.

Other labs, like the non-specialty labs are usually all covered by your plan but definitely still depends on how good your coverage is.

– Is there any comprehensive list of tests somewhere up on the net those can be performed for testing and treating our kids with the explanation i.e. what this test is for and what the result means? So that I can read up on that before I approach any doctor.

Oi. That’s a lot of possible tests. But the ones to start with would be a **CSA (comp. stool analysis) and **OAT (organic acid test). **Food allergy (or you could do a food journal instead… but if you don’t, Alletess has one for $89 that you can have your doc sign off on if willing.) –these 3 are not, imo, something you need to do often. But a good place to start for a newbie to get some baselines.

viral titers: HHV1-6, any vaccine titers you want,

AntiDnase and ASO titers (PANDAS),

Ig and all subclasses,

CBC + CMP,

T&B lymph/NK cells,

homocysteine

Things to consider at some point:

**Urine Amino Acid (specialty lab – I don’t think it’s that important but if you have proten issues, could be better than nothing.)

thyroid

cortisol

other hormones (pregnenelone, progesterone, testosterone, IGF-1)

Vitamin D (bet you money you’re low! 😉 )

other vitamins and minerals (ferritin, zinc, copper, etc)

**hair metals test through GPL/DDI(or Labbio urinary porphyrins if you prefer to consider IV chelation – we do AC so hair test only – and not expensive if not covered by insurance)

**Yasko genetics test ($500/one time deal specialty lab not covered by insurance and nothing comparable in regular labs but I do believe you can get *some* of the genes through a regular lab. I think Toni might be able to tell you which ones. These are all metabolic genes.)

Toxoplasmosis

Mycoplasma

Lyme – you can get the Western Blot through a local lab but it’s not as sensitive as a specialty lab (**Igenex) which is not covered by insurance. What makes this specialty lab special is that it actually gives you parasite information for all of them and more band information. Western blot I believe only test for borrelia and the other major one that I can’t think of right now. The lyme parents can give better info on it than I can. It’s expensive, I think it’s $1800.

I marked all the specialty lab tests with a ** and really, they aren’t that many and not stuff you need to do all at once or too soon. You could easily break them up if you choose to do them.

As for how to read them…that’s steak, not popcorn*. The specialty labs will have explanations and nice little KISS charts that tell you exactly what’s going on with an explanation attached. They aren’t fully explained well but it’s a start.

The regular labs, well…it’s hard to tell a mainstream doctor that most people are low in vitamin D to even get one to test it (which I find funny that they say most people are *not* low in it but will never test anyone to know that!) And GPs tend to not understand half of the labs that cross them anyway. Any mainstream endocrinologist will tell you that the lab reference ranges for thyroid are too wide and where most GPs tell you it’s fine because it’s in range, an endocrinologist will tell you that you need thyroid. Soooo, how to read them is a loaded question. High viral titers a mainstream doctor will tell you that it just means you’ve been exposed. They don’t take anything else into consideration. It’s an impossible question to answer, unfortunately.

*For an explanation, click here. I shamelessly stole it from Patrick Rothfuss. He rocks. Buy his books, they also rock.

When I first started researching autism I had to search the web like a mad woman. I found a lot of information but it was scattered all over the place. I had bookmarks galore and I also relied heavily on many of the listserves. I remember thinking how nice it would be to have all that information in one spot so I didn’t feel like I was just blindly searching for something when I didn’t even know what to search. I’m hoping this will make someone else’s search a little easier.

Not all protocols work for every child. And then there’s the understanding that within most protocols are “mini protocols” that could possibly do wonders even thought the overall protocol wouldn’t. Finding the right protocol can be time consuming and costly so my suggestion is to not waste 5 years on a protocol that isn’t working. Give yourself 6 months to a year on a protocol and then reevaluate. Are you seeing any results worth continuing? Is there something you could be doing that you think would be helpful and aren’t? Are there labs pointing you to a direction you haven’t gone yet? Constantly reevaluate what you are doing to get the most out of any given protocol and give it a sincere chance. If it’s not working, move on down the line to another protocol.

Also keep in mind that sometimes you don’t get results from one thing until you do another. I’ve had many parents tell me that “x didn’t work and we gave up on it but then we did y and then revisited x and suddenly it was working.” Some things just need a foundation before you can build.

Protocols can be expensive. Many of the doctors don’t take insurance and many of the labs aren’t covered by insurance. But there is a glimmer of hope. Some do take some insurance but you’ll have to search them out. For the rest, you’ll find that a lot of parents are one their own trying to do the best they can without help. Medical reform is needed but that’s another blog topic. Here are some different treatment protocols below.

DAN! (Defeat Autism Now!)
The most popular and well known protocol is the DAN! protocol. This is the protocol that the recommends much of what you hear about such as the GFCF (Gluten Free Casein Free) diet, MB12, HBOT, chelation and more. It was created by the Autism Research Institute, a non-profit that has been around for 40+ years conducting research. You can read more about ARI and DAN! here.

They focus heavily on metabolic issues, gut and metals but they are starting to grow and implement more on the immune side but it’s a slow transition. Not all DAN!s are created equal so ask around for recommendations.

Yes, this can get pricey but if you go slow, you will discover ways to make it more affordable. I’ll post a blog on that sometime in the future.

NIDS
NIDS (Neuro-Immune Dysfunction Syndrome) is almost entirely immune related. You can find more info here and here. This is the protocol my son had been on for almost 2 years and we’ve had great success although not full recovery. The basic protocol is antiviral, antifungal, SSRIs and the NIDS diet. There are only 3 places to see a NIDS practitioner. Dr. Michael Goldberg in Tarzana, CA, the Northern New York Autism Center in NY and they also have an office in TX. To my knowledge, if you go to NNYAC in either location you’ll be seeing Dr. Russell. There is a NIDS listserve that can be very helpful if you are considering this protocol. Dr. Goldberg does take some insurance and I’m not sure about NNYAC.

Yasko
Dr. Amy Yasko bases her protocol on the expression of certain metabolic genes. It’s actually quite hard to understand on your own because if you are anything like me, you feel like you need a doctorate in biogenetics and biochemistry to understand what she is saying! Parents manage to push forward with it, though. It’s quite expensive but enough people have tremendous success with it and figure it out via her listserve to which she and other parents communicate and help. I’ve heard most people have to read her books about 2 or 3 times before they even start but many are thrilled with the results. Dr. Yasko does not see patients anymore so most parents are on their own unless they want to see (or have phone consults with) the few doctors that implement the protocol. Dr. Nancy Mullan in Burbank, CA is one that no longer uses the DAN! protocol and is fully Yasko and Dr. Rachel West in Santa Monica still implements DAN! but now also uses Yasko. A few other Dr.’s use some parts of her protocol. While most DAN!s are familiar with her protocol, most don’t use it so there are only a few doctors that actually implement her full protocol.

You can learn more here and her listserve can be found here. The store can be found here.

Pfeiffer Treatment Center
The PTC is similar to DAN! but they tend to focus more on the copper/zinc ratio. Not a whole lot to say here as much of it is covered under DAN! but do understand it is their own protocol, not a DAN! protocol. Very similar, though.

Homeopathy
I must admit, I don’t know much about homeopathy. It would be a sad explanation to hear it from me! When parents start talking about homeopathic remedies it all goes right over my head as I haven’t even attempted to learn since we just aren’t using it but suffice it to say that many find success here. I know that they work under the premise that “like cures like” although it’s probably too simple of an explanation. I would caution that if you choose this route, make sure you use someone very familiar with autism. Get recommendations. Here is a link to a reputable place but I’m sure there are others. Google it for more info or a place near you.

Aside from the above protocols, there are many other types of protocols that are little more specialized. Yes, some of them could fall under other protocols as more of a “sub protocol” but they are good to know so I’m adding them.

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections)
PANDAS, in it’s simplest terms, is the overproduction of Strep antibodies. It’s based on the work of Susan Swedo and is starting to gain mainstream acceptance although it’s not quite there yet. I don’t have a PANDAS kid but I know of many so it’s always good to at least run the titers to check. More info on it can be found here and here.

Lyme Induced Autism
Some cases of autism are aggravated or even caused by Lyme. I don’t have a Lyme kid so I don’t know much about it but you can find more info on LIA through the LIA Foundation.

NAET and BioSetNAET (Nambudripad’s Allergy Elimination Techniques) and it’s offshoot, BioSet, are becoming more and more used within the autism community. No personal experience but I hear a lot of good things.

Gastrointestinal Doctors
There are two doctors in the US that are acutely aware of autism and it’s GI issues. Dr. Arthur Krigsman at Thoughtful House and Dr. Buie at MassGen.

Stan Kurtz’s Anti-infection & MB12 Spray
This would generally fall under the DAN! protocol but Stan asked me once to put it on my “Introduction to Autism” file that I sent to people so I’m adding it here, too. You can read about it here, here, and here. Stan is also on the Board of Directors for Generation Rescue as the Executive Director.

I want to make sure that I take the time to say that just because a protocol isn’t mentioned on here, it doesn’t mean it doesn’t have value. It simply means that I either overlooked it, forgot about it or just plain don’t know about it and no one has ever brought it to my attention. Keep researching, keep learning and don’t give up. If a protocol doesn’t work for you, try another. And there will always be a section of people that do nothing at all and their children are fine. There’s no guarantee that any of the protocols will work and there’s no guarantee that if you do nothing your child will be okay. Do what you are comfortable with and do it as best you can. That’s all anyone can ask of you as a parent. Don’t give up on your children no matter what your choice because they aren’t dumb, mentally retarded or unaware. They are people and they do have feelings, emotions, and intellect whether they are able to express them in a way that you understand or not.

Subscribe via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.